%%USERNAME%%    %%ACCWORDS%% %%ONOFF%% |
 |   Reflections and ruminations from a modern day Alice - Life is Wonderland |
|
Reflections and ruminations from a modern day Alice - Life is Wonderland  Welcome to the place were I chronicle my own falls down dark holes and adventures chasing white rabbits! Come on In, Take a Bite, You Never Know What You May Find... "Curiouser and curiouser." Alice in Wonderland    |
| There is a fury inside of me today that I am trying to quell with seemingly copious amounts of Motrin and coffee. Today it feels like my pain is more than just topical in nature. There is hot anger running through me and this anger feels like a new, unwelcomed component of dealing with my HS. I’m beyond irritable. I am unapologetically short-tempered and intolerant. Since my diagnosis in my early thirties, I have lived by the rules of prevention and pain management. I have gathered what remedies and suggestions I could from the forums and tried not to be frustrated by the lack of real medical support. My dermatologist called it an “orphan disease”, abandoned largely by the medical profession. Until you are dealing with an agonizing flare up, the true nature of that term may allude you. What it really means is that there is nothing out there to treat you, no cream or ointment, not oral medication to drive the painful boils back down once they erupt. There is nothing you can take medically to control the HS, to keep it locked in remission. There is no cure. You just have to deal…deal with the pain and with the knowledge that it can take you down at any time, triggered by stress, by weight gain or just by the whims of a stalking disease that resides in your genes. Most days I avoid this tide of anger and frustration by counting my blessings. I believe that I am one of the lucky ones. My HS outbreaks so far have been limited to my upper body and with the exception of the one in my neck, and my resulting scars are largely invisible to others. This is not the case with many people. HS can be severely disfiguring. The boils that erupt, those cysts that become infected and eventually rupture cause bad scarring. I have seen images of young men and women with puckered tracks of scarlet scar tissue running down both sides of their groin. It is this most intimate invasion of the disease that leads to isolation and depression for so many. Most days, I remember those images and the stories of the people in the forums, and I feel ashamed of the anger. Today though, I’m feeling furious with my body, with its inexplicable ability to manufacture these horrible, ugly nodules that burn and throb and swell to an impossible size. Today I want to scream. Instead, I stock up on the large size band aids and take the antibiotics that will only speed me closer to the inevitable rupture of my skin and the formation of another scar. The antibiotics don’t make me feel better, in fact, the doxycycline tears up my stomach but there is still that small chance that it will stop the inflammation before it progresses to that awful end stage. There is a chance, according to my epically hopeful primary care doctor, that it may attack the inflammation and help the cysts drain and alleviate before rupture – saving me from more scarring and the general unpleasantness that comes with those ruptures. If she can hope, I suppose I can try to be hopeful as well. Hopeful and less angry... With all of the truths I have come to understand about HS, I am most thankful for the diagnosis. Being able to give a name to the affliction I suffered from for so long in the dark, was honestly the best thing. With diagnosis came the opportunity to explore the research, the remedies and treatments that were available to me. Being diagnosed suddenly gave me the important reasons for this very unreasonable disease. If you think you or someone you know might be suffering from HS, this is the best, most informative and straight forward site I have come across: https://www.nobsabouths.com/what-is-hidradenitis-suppurativa If you suspect you may be suffering from HS, see a doctor, start with getting diagnosed. Find what works for you, because it’s different for everyone. Give yourself those angry, furious days…but always go back to hope. |
| This week I passed the 14 year mark as a member of writing.com. The email hit my inbox along with the expected reminders to update my blog...something I have been hard pressed to do much over the last two months. I could blame it on the lack of time and discipline, the usual suspects, but the truth is my mind feels cloudy - it feels difficult for me to focus. I feel limited with being able to express myself lately, and seem to oscillate between a kind of manic contentment and a crouching darkness that makes me feel heavy and hopeless at times. I know that not writing, not attempting to write, is depriving myself of something key and I feel the absence of it acutely at times. I need to press myself into those familiar spaces again, force the words. My heart needs the outlet, my soul needs the confessional, my life needs the anchor. "Blogging Circle of Friends " DAY 1916 February 13, 2018 Write about three people from whom you've learned the most. I've been fortunate to have had people in my life who have taught me many things, lessons that were good and bad. It is a difficult question because overwhelmingly I have learned the most about myself from people who have hurt and disappointed me the most in life. I have learned from past lovers that some men are forever damaged in ways that can not be fixed, damage that can coat you like a toxin. No one comes to save you, you have to save yourself. You have to choose yourself. In those terrible moments, you can discover a faith you didn't know you had and a strength you did not know you possessed. I have learned the most about myself from being forced into corners, from the hollow sound of my heels in hospital corridors and the fear of knowing a man who claims to love you can still put you in the ground. I am blessed to know a different man now, a husband that cherishes and champions me. He is a man who makes promises and keeps them, a man who magnifies all those special, little moments in life that once eluded me. He has taught me that men can be passionate without all the darkness and the violence. Through him, I have learned that men can live and love without the chains of addiction and rage binding them to their demons. Most of all, my husband has taught me that hope lives inside even the very wounded and that with consistency, with commitment and the smallest, simplest loving gestures, it can grow and become the foundation of a life worth living. "Blog City ~ Every Blogger's Paradise" DAY 1519 Prompt: February 13, 2018 Prompt: Do you think people can change as to how they view love as years go by? And how do you think they perceive love and romance in different stages of their lives? We have all seen them, that sweet elderly couple walking hand in hand or sitting together on a park bench. They are the standard of measurement for a lifetime of love. I marvel at couples who celebrate those milestone anniversaries; 50,60, 70 years together. Ask any one of them and I'm sure they've stories to tell, stories that might sound like fables where the messages are about patience and forgiveness. To make a life with someone that spans decades, there must be forgiveness and acceptance as much as love and devotion. The rush of falling in love is a temporary condition. The euphoria of a budding, passionate romance always gives way to life eventually. Couples marry, have children...the pace of life changes and it gets harder to manage the expectations of another amid the beautiful mess of raising a family. The definition of romance changes over time I think. It is forced to become something else...trails of rose petals and long Sunday morning trysts yield to more practical measures like being able to take a hot bath why your spouse keeps the kids from banging on the bathroom door looking for snacks. My husband is fond of saying, "that's just life" when I complain about lack of "us time" or when we go consecutive nights with a child between us in bed and dogs layered at our feet. We are not the same individuals who once kissed in a rainstorm or spent intimate weekends in romantic inns. Sometimes though, I get our daughter to bed early and go downstairs to find the fire still roaring and the room lit by glowing candles. Love and romance move through time with us, they morph and change as we manage life the best we can I think. Sometimes sharing a waning winter evening and a bottle of Cabernet with the one we love is all the romance we need. |
| "Blogging Circle of Friends " DAY 1907 February 5, 2018 Prompt: Use these three nouns in today's blog entry: holiday, apartment, sun. The robotic buzzing woke Elson from her troubled sleep. The text messages were coming in rapid fire progression, sending her iphone skittering across the nightstand with the vibrations. She did not need to read them, Elson knew who the sender was. She could picture her older sister Megan, standing in the TSA line at TF Green airport, her cell phone clutched in one perfectly manicured hand and her expensive designed carryon in the other. Elson was late. Elson wasn't just late though. Elson had decided she wasn't going on holiday. She also decided it was far easier to not tell her sister ahead of time. She did not have the constitution to neither explain or listen to her sister's admonishments. The iphone buzzed again, angrily, its manic trajectory pitching it off the edge of the nightstand and onto the rug. Elson left it where it landed, grateful that the shag carpeting muffled her sister's ceaseless texting. The sun was making every effort to barrage its way past the heavy curtains. It seeped around the far edges, a narrow band of insistent light. she would have to get out of bed today. She would have to leave today, go outside and get groceries. She would have to call Megan back and explain why after three months of progress, she had experienced a setback of crippling proportions. The panic attack had come out of nowhere. It had driven her into the group, back into the cave of pain and fear she had fought so long and so hard to escape. One minute she had been standing in the grocery aisle buying travel sized shower gel and toothpaste, and then the next, she'd been racing home in the dark. She had fallen through the door of her apartment, her lungs screaming, assaulted by the nightmare force of her fear. No, Elson would not be going on holiday. She would be staying in, shackled here by the phantoms of her past and the demon with the face of an angel. "Blog City ~ Every Blogger's Paradise" DAY 1511 Prompt - February 5, 2018 Prompt: What is betrayal to you? How many faces does it have? Who is to blame, the betrayed or the betrayer? Betrayal can have many faces - those of lovers, friends, family. You have to enjoy a certain level of intimacy with someone to betray them however, so it seems a stranger might be the only one who is truly immune. I think as humans, we all have the capacity to act as Betrayer and Betrayed. Relationships sour and people cheat rather than face the reality of waning love. People backstab and sabotage co-workers to gain power or opportunities. We can attempt to justify our actions but the reality is, it is a conscious and calculating decision to betray someone. I think it takes a toll however, on both people unless a person is completely free of moral responsibility and empathy. In my experience, the stain of having betrayed someone you cared about, wears indelibly on the average heart. |
View Portfolio
Visit Notebook
Send Gift Points
Awards
Badges
Send Email
Community Newsfeed
General Discussion
Sponsored Items
Book of Trinkets
Static Items
Books
Groups
Interactive Stories
Audio
Campfire Creatives
Community Notes
Crossword Puzzles
Documents
Folders
Images
In & Outs
Madlibs
Photo Albums
Polls
Product Reviews
Quizzes
Survey Forms
Web Pages
Word Searches
